Low Vision Appointment!!

We have finally had the long awaited Low Vision appointment with Dr. Primo in Atlanta.



This morning, we went and visited Dr. Primo. She did a quick eye test to see how Lynk's vision is. Unfortunately, she measured his vision at 20/320, which means his vision has gotten a bit worse. But it could also be that he's just having a bad eye day. She will check his vision each time we visit her, with our next appointment in September. It will be a good way to see how his vision changes.

Dr. Primo also did a contrast test with Lynk. The chart to the right shows what type of test it is. The top line is dark, while the letters get progressively lighter as they go down. Lynk could only read down about 4 lines, while the average person can read about 3 lines below what Lynk can. This means he does have contrast issues, and needs high contrast materials in school. That means no fun colored paper, colored fonts, etc. Because he does have the contrast issues, Dr. Primo suggested that the next time we get Lynk lenses in his glasses, that we get him brown transition lenses with a permanent brown tint. Apparently the brown tint helps those who have contrast issues. It will also help a bit since Lynk does have a severe light sensitivity, and the permanent brown tint would help with the light sensitivity.

We discussed the issues Lynk has been having, and how to go about working on getting him seeing better. She said Lynk does need a TVI (Teacher for the Visually Impaired), and that he also needs to start seeing an Occupational Therapist who is familiar with working the visually impaired. She believes he will need weekly OT. She's also putting in the notes that Lynk needs to be considered for beginning Braille, especially as his vision has gotten worse.

We did talk a bit with the OT who was at Emory. She did a few things with Lynk, like testing his depth perception by having him toss balls into a can from a few feet away, and she also showed him some assistive devices. Dr. Primo recommends that the school look into getting an Acrobat CCTV for Lynk to use at school. It's a somewhat portable device that will enlarge anything Lynk needs enlarged, from homework, to books, even the SmartBoard at the front of the room. The camera on it swivels and has a distance function, making it versatile and great to use in the classroom.

CCTV for reading

CCTV using distance option

Dr. Primo also had Lynk try out a monocle. Yes, a monocle. A half of a pair of binoculars. But the cool thing is, using the monocle, Lynk was able to read the eye chart down to 20/100! He thought it was the coolest thing ever. It does have limitations, though. It has a very narrow field of view, but it could really come in handy for Lynk at school. Dr. Primo put in the notes that the school should approve the use of an iPad for Lynk at school.

Monocle

The big thing is that we aren't done with evaluations yet. Though Dr. Primo gave us suggestions on
what devices to use, she wants him further tested to see specifically what would work best for Lynk. She wants him to do an assistive technology evaluation through the Georgia Academy for the Blind (GAB). This evaluation is going to take a while to get, though. Lynk has to have a LOT of paperwork done for the evaluation referral, and the paperwork has to be completed by a TVI. So Lynk's school needs to first get him a TVI, then they can work on the referral to GAB. While it may not help him this school year, by the time next year rolls around, he should be set up!

Speaking of next school year, we decided that Dr. Primo will see Lynk again shortly after school starts next year, to check to see if his vision has changed, and to see if he's having any new issues with low vision. She wanted to wait about a month or so after school starts to see where he's having difficulties at, so that we have a starting place to move forward from. So our next appointment with her is Sept. 20. And, during the appointment, Dr. Primo was kind enough to go ahead and fill out Lynk's EFMP paperwork for me!

For those who may have forgotten, the Army requires that anyone with health issues be enrolled in EFMP, Exceptional Family Member Program. It ensures that that wherever we get stationed, that location has the services needed. So we now have paperwork saying that Lynk is Legally Blind, has a Retinal Dystrophy, requires vision devices, and also needs to have access to retinal specialists, low vision specialists, possibly geneticists, (just in case he needs more testing later on), and occupational therapists. So shortly I'll be able to put in that paperwork and get the ball going on EFMP.

We are still waiting to hear back from Dr. Jain about a final diagnoses for Lynk. I contacted his secretary this morning, and she said she will send Dr. Jain a reminder to look over his genetic tests and to please give me a call when he's done so. So who knows, maybe we'll have an actual diagnoses soon. The interesting thing is, Dr. Primo said that Lynk's symptoms so far are more consistent with a cone rod dystrophy than Stargardt's. And she looked at Dr. Jain's previous notes, and Dr. Jain's notes said he suspected cone rod dystrophy more than Stargardt's, but Lynk's genetic testing showed mutations in the ABCA4 genes, which maybe means Stargardts. As Dr. Primo put it, "the diagnoses at this point is academic" (referring to whether Lynk has a cone rod dystrophy or Stargardt's). I guess the two conditions are nearly identical, with cone rod affecting just the cones in the eyes, while Stargardt's affects the entire macular region, including the cones. I'm not sure where we will go from here, besides a lot of meetings with Lynk's school, getting a TVI, and trying to get the evaluation from the Georgia Academy for the Blind.

It's been a rough start to the New Year, especially with the sudden passing of the boy's Great-Grandmother, Dorothy Musil, who we are all going to miss greatly. Even though we are grieving her loss, we are starting to see the light at the end of the tunnel for Lynk's vision. There may never be a cure, but at least we've put our feet on the path to get him all the help he needs.

The boys hanging out with their iPads at the hotel